Development of a holistic tool to measure the impact of pain in adults with cerebral palsy across the lifespan

Cerebral palsy (CP) is the most prevalent, life-long neurological disability that presents in 1.4 to 3.3 people per 1000 live births. Pain is a common presenting symptom with this condition, especially as an individual ages.

However, despite its high prevalence and potential impact on daily life, there is a significant deficiency of research on CP and pain.

This contrasts with other musculoskeletal conditions, such as arthritis and osteoarthritis, which have been more thoroughly studied.

Recent research has shown that several pain measurement tools for CP are of poor quality, often ignoring the social and psychological aspects of pain entirely.

This project aims to address these issues by developing a holisitc pain assessment tool for use across the lifespan for individuals with CP.

The project is made up of 4 parts. 1) Preparatory Work - a systematic review to explore relevant literature and evaluate current practices to determine how psychological research can achieve inclusivity for adults with CP and a questionnaire administered to adults with CP to explore their lived experiences of pain. 2) Item Development - interviews and focus groups with patients, carers, and health professionals. 3) Scale Development - utilising the results of the previous studies to create items for potential inclusion in a multi-faceted tool for measuring pain in adults with CP, adhering to the IASP definition of pain. 4) Scale Evaluation - discussion of the results of parts 1-3 with an advisory group, agreeing on the final items for the scale evaluation, and conducting another questionnaire study to test and refine the tool.